Discussions Worth Sharing Technology Eugenics Designer Babies The

Discussions Worth Sharing Technology. Eugenics. Designer Babies The Future of Reproductive Technology

Outline • • Background Who is it for Canadian statistics and regulations Discussions Reflections Future directions Summary Discussions worth Sharing

Objective Discussions worth Sharing • General understanding of preimplantation genetic diagnosis (PGD) technology • Gain a wider perspective on cultural, religious and social implications • Think actively, discuss openly, participate!

Background Discussions worth Sharing Designer Baby – “a baby whose genetic make-up has been selected in order to eradicate a particular defect or to ensure that a particular gene is present”

Background Discussions worth Sharing Preimplantation Genetic Diagnosis (PGD) • Assisted human reproductive technology • Screening of embryos for genetic abnormalities prior to transferring to the uterus • In vitro fertilization consists of: 1) Ovarian stimulation 2) Egg retrieval 3) Egg fertilization 4) Embryo development 5) Embryo transfer

Who? Discussions worth Sharing • Individuals or couples who are at risk to pass on a condition that is the result of a variant in a single gene • Individuals or couples with a chromosome condition, or who have had a previous child with a chromosome condition • Women who are at an increased risk to have a child with a chromosome condition due to their age

Canadian Statistics - 2010 Discussions worth Sharing • 22 769 patients underwent in vitro fertilization over the past 5 years • 61% of fertility clinics responded (17 out of 28 clinics) – 6 performed embryo biopsy on site – 7 referred to other units in Canada – 3 referred to units in U. S. • Majority do not offer PGD due to: – Lack of resource/staff/money/expertise – No market demand – Not convinced it would yield accurate diagnosis

Regulations Discussions worth Sharing • Assisted Human Reproduction Act (2004) • Prohibited Activities – Create a human clone – Create an in vitro embryo for any purpose other than creating a human being – Maintain an embryo outside the body after 14 days of fertilization – Alter the genome of a cell of a human or in vitro embryo – Gender selection for non-medical reasons

Discussions Controversies

Discussions worth Sharing

Discussions • Selecting for a disability “Being deaf is not about being disabled, or medically incomplete - it's about being part of a linguistic minority. We're proud, not of the medical aspect of deafness, but of the language we use and the community we live in. ” Discussions worth Sharing

Discussions worth Sharing

Discussions • First born child: 76% • Surveyed among have no gender pregnancy women: preference 58% had no gender preference • More than one child: 30% want equal number of girls and boys, and 58% have • Couples undergoing no preference fertility treatment: • Using technology: 40% would like to 92% against it select the sex of their baby Discussions worth Sharing 234 surveyed: • 39% have no preference • 39% prefer a girl • 22% prefer a boy

Discussions • Adam Nash • One of 15 embryos • Saved his sister suffering from Fanconi’s anaemia • Great achievement or unethical? Discussions worth Sharing

Discussions worth Sharing Reflection Religious, Cultural, Societal Impacts

Religious Impacts Discussions worth Sharing • Dignitas Personae • “Preimplanation diagnosis…constitutes an act of abortion. . . By treating the human embryo as mere ‘laboratory material’, the concept itself of human dignity is also subjected to alteration and discrimination…Such discrimination is immoral and must therefore be considered legally unacceptable…”

Cultural Impacts • India – Prefer boys • China – Country side Prefer boys Discussions worth Sharing

Social Impacts Discussions worth Sharing • Socioeconomic disparity • Discrimination – Social activists – Disability activists • Eugenics – “the science of improving a population by controlled breeding to increase the occurrence of desirable heritable characteristics”

Future Directions Discussions worth Sharing • More research, increased market demand, increased access to screening – More on-site PGD • • More will choose PGD over other methods When should it be refused? What to regulate? Should government provide funding?

Summary • • Discussions worth Sharing Science and technology is always evolving No right or wrong views Religious, cultural, societal influences Keep an open mind “The important thing in science is not so much to obtain new facts as to discover new ways of thinking about them. ” - Sir William Lawrence Bragg More information at: http: //futurebabies. weebly. com

References 1. 2. 3. 4. 5. 6. 7. 8. 9. 10. 11. 12. 13. 14. Discussions worth Sharing Collins M. Designing Rules for Designer Babies. Sci Am. 2009; 300(5): 29. Crockin S. Adam Nash: legally speaking, a happy ending or slippery slope? Reprod Biomed Online. 2001; 2(1): 6 -7. Dahl E. Procreative liberty: the case for preconception sex selection. Reprod Biomed Online. 2003; 7(4): 380 -4. Edwards RG. Ethics of PGD: thoughts on the consequences of typing HLA in embryos. Reprod Biomed Online. 2004; 9(2): 222 -4. Klitzman R et. al. Anticipating issues related to increasing preimplantation genetic diagnosis use: a research agenda. Reprod Biomed Online. 2008; 17 Suppl 1: 33 -42. Mc. Mahon CA. Community concerns about sex selection: research as a way forward – response to Edgar Dahl’s ‘The presumption in favour of liberty’. Reprod Biomed Online. 2004; 8(3): 272 -4. Murphy TF. Choosing disabilities and enhancements in children: a choice too far? Reprod Biomed Online. 2009; 18 Suppl 1: 43 -9. Speechley KN, Nisker J. Preimplantation Genetic Diagnosis in Canada: A Survey of Canadian IVF Units. J Obstet Gynaecol Can. 2010; 32(4): 341 -7. Steinbock B. Designer babies: choosing our children’s genes. Lancet. 2008; 372(9646): 1294 -5. Assisted Human Reproduction Canada. Legislation, Regulations and Guidelines. 12 Sept 2011. Available at http: //www. ahrc-pac. gc. ca/v 2/index-eng. php. Accessed March 8, 2013. Carlson E. Image Archive on the American Eugenics Movement. Available at http: //www. eugenicsarchive. org/html/eugenics/essay 2 text. html. Accessed March 8, 2013. Kirkey S. Center For Genetics And Society. Embryo testing stokes concern over designer babies. 19 Sept 2011. Available at http: //www. geneticsandsociety. org/index. php. Accessed March 8, 2013. Lewis D. Infertility Awareness Association of Canada. Pre-Implantation Genetic Diagnosis Now Available to all Canadians! 2006. Available at http: //www. iaac. ca/content/pre-implantation-genetic-diagnosis-now-available-allcanadians. Accessed March 8, 2013. The Congregation for the Doctrine of the Faith. Instruction Dignitas Personae on certain Bioethical Questions. 8 Sept 2008. Available at http: //www. vatican. va/roman_curia/congregations/cfaith/documents/rc_con_cfaith_doc_20081208_dignitaspersonae_en. html. Accessed March 8, 2013.

Questions Discussions worth Sharing